Introduction

In 2005, as part of Alzheimer Europe’s Business Plan project on home care, short descriptions of home care provisions were prepared for 25 countries within Europe. These reports were written with the help of Alzheimer Europe’s member associations and on the basis of recent literature such as the EUROFAMCARE reports[1] and information from Ministries and other national sources. Member associations were asked to provide information about relevant legislation, the organisation and funding of home care, the kinds of home care services available and the extent to which carers and people with dementia are consulted with regard to the provision of such services.

It became clear that there were tremendous differences between countries, particularly in terms of State responsibility, funding, the role of families and the actual availability of home care services. Differences were also detected within countries.

A few common issues emerged such as the lack of any specific reference to people with dementia in laws and documents pertaining to the provision of home care services, an emphasis on home care services for the elderly and/or disabled, limited reference to any actual obligation on the part of the State to provide home care services and the involvement of families, voluntary organisations and NGOs.

As much of the information obtained was based on services for elderly and/or disabled people, the following sections will frequently refer to home care services for these two groups. The reports do not specifically address the issue of home care services for younger people with dementia. This will be covered by the next project on social support services for people with dementia (EuroCoDe, WP4), which is funded by the European Commission and should be finalised by 2008.

State responsibility for care of elderly dependant people

In most countries, the State is responsible for providing home care services, either directly or by granting allowances that people can use to purchase them. In Denmark, Norway, Iceland and Sweden, the State is legally obliged to provide such services for the elderly if needed, although in Sweden this is only if a person’s needs cannot be met in another way. The services are mainly funded through general taxation.

In some countries, there is no legal obligation to provide home care services but there is a more general, less precise commitment on the part of the State to provide the necessary services to enable elderly people to remain in their homes for as long as possible (Spain, England and Wales, and the Czech Republic) or to provide support for the elderly and disabled (Hungary and Estonia). In Bulgaria and Poland, the State provides some home care services but the priority is given to elderly people, on low incomes, living alone. The provision of home care services falls into the category of social assistance and is linked to poverty, age or social isolation in some countries.

Luxembourg, Germany Austria and Belgium (just Brussels and Flanders) have long-term care insurances which cover home care. The actual level of care provided is dependent on the assessed level of need and is subject to the fulfillment of certain conditions. In Switzerland, home care services are also financed through an obligatory care insurance but access to such services is determined by cantonal law.

With regard to legal obligations, the Health Service Executive in Ireland is empowered (under the 1970 Health Act), but not required by law, to provide community care services in Ireland. Consequently, access to such services has been limited and varies from one region to the next. In England and Wales, the State is obliged to provide an assessment of care needs but is not actually obliged to provide the services. In Scotland, on the other hand, people over the age of 65 are entitled to free nursing and personal care as well as increased access to direct payments for home care services.

The role of families in caring for elderly dependant relatives

The organisation and provision of home care services for people with dementia in Europe cannot really be considered in isolation from family carers. In a number of countries, especially those in southern Europe (e.g. Malta, Spain, Portugal, Italy and Greece), there is a cultural tradition of families caring for their elderly dependent relatives. In many cases, this involves daughters and daughters-in-law caring for their parents and parents-in-law, although in some cases, this extends to aunts and uncles. In these countries, there is an actual legal obligation to provide care. The reliance on the family to provide care often means that the provision of home care services by the State is considered as discretionary or a concession.

A legal obligation for relatives to contribute towards the cost of care also exists in Austria, Estonia, France and Poland. In Belgium and certain cantons in Switzerland, relatives may sometimes be asked to contribute towards care.

In those countries, where home care services are means tested and/or dependent on an assessment involving an analysis of “available assistance”, families may be obliged to indirectly contribute towards the cost of care or provide it themselves.

Other arrangements for care at home

In Bulgaria, Hungary and Poland, it is possible to draw up a contract with third parties which involves ceding property in exchange for care and/or maintenance. Care is not normally provided by the State in such cases even if the person lives alone. Another form of home care is family accommodation/boarding out, which is practiced in Portugal. This consists of temporarily or permanently housing elderly dependent people within families. This service is intended for elderly people who do not have a family or for whom insufficient social support prevents them from being cared for in their own homes.

Conditions governing access to home care services

Often people with dementia, who are in need of home care services, fall into the category of assistance for elderly dependent people. Those who are younger may have to apply for assistance based on disability. For countries which have a long-term care insurance, the emphasis is on having a recognized medical condition which creates a situation of dependency necessitating a certain degree of care over a prolonged period of time. In southern countries, priority tends to be given to elderly people with limited financial resources and no family. This, combined with the tradition of family care, means that people do not always apply for the services they need. Also, the availability of appropriate services tends to be unevenly distributed or simply lacking.

The role of voluntary organisations and other NGOs

As appropriate and sufficient home care services for people with dementia are not always provided by the State, the role of voluntary organisations, the Church and other NGOs is very important. In the vast majority of countries, voluntary organisations, NGOs and the Church play a role in providing home care services. Often, these organisations are completely independent, but in some countries, their services are organised and coordinated in collaboration with the State.

One organisation which is active in a number of countries is the Red Cross. In fact, in the Czech Republic, it was instrumental in setting up the first home care services. Similarly, in Greece, the Red Cross provided the first home care services on a small scale in collaboration with other voluntary associations including the Church.

An interesting service, known as the good neighbour scheme, was set up in 1982 by Caritas in Malta. Every elderly person is visited, assessed and invited to participate in this free service. If interested, volunteers then motivate neighbours who keep a friendly and regular watch on the elderly person. Some provide direct help and some alert the relevant authorities in order to organise help.

Kinds of home care services provided

Most home care services can be roughly divided into two categories: those providing assistance linked to a person’s residence (e.g. cleaning, shopping, laundry, transport, meals-on-wheels etc.) and those linked to personal care (washing, dressing, eating, incontinence care, getting in and out of bed, taking medication etc.). These services are available in most countries with a reasonable level of home care service provision.

Measures to enable people to continue living in their own homes for longer such as home adaptations, assistive technology and “telealarm” systems are a little less common. In Poland, France, Malta and Bulgaria, assistance may be provided with small household repairs. In Denmark, volunteers usually help with this.

With regard to supervision for people who cannot cope if left alone for long periods, day and/or night time sitting services and day care centres are available in some countries. All but three countries in this survey (Romania, Spain and Turkey) mentioned day care centres, either for people with dementia or more generally, for elderly people. Quite a few countries (Belgium, the UK, France, Germany, Malta, the Netherlands and Sweden) referred to provisions for night time care in the form of sitting services or night time care centres.

Finally, in a few countries (Bulgaria, Denmark, France, Sweden, Norway and Luxembourg) the importance of social contact and entertainment was recognized. Services were mentioned in connection with leisure activities, social contact, companionship and social needs. In some countries, efforts are made to organize holidays for people with dementia and carers, either together or separately. This is often with the involvement of Alzheimer Associations. In Germany and Luxembourg, carers are entitled, within the long-term care insurance system, to a set number of days holiday per year, during which time a replacement carer is provided.

The extent to which home care services are adapted to actual needs/wishes

People with dementia have various needs which differ from one person to the next and change over time. A flexible set of home care services is therefore needed which can easily be adapted to the needs of each person if and when required. Some countries have a limited range of services which do not take into account the specific needs of people with dementia.

In the Czech Republic, for example, assistance with everyday tasks is not routinely provided. In Romania, home care services only cover nursing care and even that is limited to a certain number of days per year. In the Nordic countries and those which have long-term care insurances the emphasis is on helping people to maintain their independence and continue living at home rather than on whether they qualify for a pre-determined set of services.

Nevertheless, people with dementia do not always receive the services they need or want. This may be because the needs assessment is biased towards physical disability and does not sufficiently take into account other needs such as supervision and emotional support. Sometimes, sufficient and appropriate services do not exist. This may be especially the case for younger people with dementia or for people with learning disabilities and dementia.

How people with dementia (or carers) pay for services

Usually, people receive services in kind (e.g. organised by the State, NGOs and/or voluntary, charitable or church associations) or an allowance which can be used to pay for or contribute towards the cost of services (either from the State, independent service providers or non-professionals). For services in kind, a contribution from the service user is often required.

Service cheques and personal care budgets exist or are being introduced in a few countries (Belgium, France and the Netherlands). This system gives people with dementia (or carers acting on their behalf) the opportunity to choose the exact services that they want. This also gives them some control over service providers with regard to the quality of the services provided, as the user can always take their custom elsewhere if dissatisfied. Many people like this system but some feel that the organisation and responsibility involved would be too much for them to handle, especially due to cognitive difficulties.

In Denmark, people receiving personal and practical home care services are entitled to change them for others that they would prefer. In a few countries, people can decide whether to have services in kind or money to purchase the services themselves.

The extent to which people with dementia and carers are consulted

In most countries, carers and people with dementia are not routinely consulted about the home care services they receive. There are however a few exceptions.

In Sweden, for example, it is stated in the Law on Health and Medical Services (1982) and in the New Social Legislation (2002) that home care services should be organised in consultation with the people and relatives requesting them. Similarly, in Finland, the Act on the Status and Rights of Social Welfare Clients (2000) states that clients’ wishes and opinions must be taken into account when planning and providing social welfare.

Under the Community Care and Health (Scotland) Act 2002, both the views of the person whose needs are being assessed and the views of the carer should be taken into account in so far as it is reasonable and practicable to do so.

At the request of the Danish Ministry of Social Affairs, some communes sent out questionnaires to obtain qualitative and quantitative information on the needs of the people with dementia and their carers. In England and Wales, the government produced guidelines on community care assessments (Government White Paper, Caring for People, 1989) which emphasise the need to take into account the wishes of individuals and their carers, but this is not a legal obligation.

Second AE survey confirms the role of carers and the lack of adequate support

In a separate survey[1], recently carried out by Alzheimer Europe, involving over 1,000 carers in France, Germany, Poland, Scotland and Spain, the organisation explored the impact of dementia on carers and assessed the availability of services for them.

The survey confirmed that the majority of people with Alzheimer’s disease were cared for at home (86%), whereas a minority were in nursing or residential care (10%) or living in sheltered housing (1%). There were slight differences between countries, as the percentage of people living at home differed from 63% in France to 97% in Poland.

The results also painted a shocking picture of the level of commitment required from carers. One in five carers of people with Alzheimer’s disease in the mild stages reported that they provided more than 10 hours’ care each day. For carers of people with Alzheimer’s disease in the late stages, one in two reported providing more than 10 hours’ care per day.

It is essential for carers to be able to access adequate home care services to allow them to carry on in their caring role without jeopardising their own health. Unfortunately, the survey also revealed that many carers lack basic support services to help them cope in their caring role. A significant number of people do not have access to essential services such as home help, befriending or respite care. When these services are available, many carers have to pay for them out of their own pockets.

Not surprisingly, when asked whether they thought that the level of care for the elderly was good in their country, only about one in five carers agreed with the statement. This percentage varied from 6% in Poland to 30% in Scotland. Also, although carers were not asked specifically about the quality of home care services, these figures provide some information about the degree of satisfaction of carers.

[1] Alzheimer Europe (2006): Who cares? The state of dementia care in Europe

Conclusion

The two home care surveys carried out by Alzheimer Europe highlighted great disparities in the provision of home care services within Europe and the need for greater support for carers. However, it must be borne in mind that current provisions reflect the historical, economic, political, cultural and religious developments that have taken or are taking place in each country. Nevertheless, this should not prevent governments from recognising and respecting the right of elderly, dependent people to appropriate and affordable home care services. Alzheimer Europe and its member associations urge governments to take the necessary steps and to ensure that home care services are adapted to the specific needs of people with dementia.